The invisible suffering after the pandemic

Teenage whims drive many parents to despair. Erika Sjögren from Zurich, on the other hand, wishes her daughter Lea had whims. She would come home late or get into mischief.

But all the 15-year-old can think about is this fog that makes her forget words and things. There is the pain when she has overdone it. The dizziness when she stands up. The sensitivity to light and noise. The complete lack of energy. That is why Lea spends a lot of time lying on the sofa in the darkened living room.

It all started with Covid

Lea suffers from ME/CFS, which developed in her as a result of long COVID. The abbreviation stands for myalgic encephalomyelitis/chronic fatigue syndrome. The name is as complex as the clinical picture. ME/CFS has been classified by the WHO since 1969 as a neuroimmunological disease that often leads to a high degree of physical disability.

Nevertheless, the disease remains largely unexplored. One reason for this is that it was dismissed as psychosomatic for a long time – and still is. Another reason is that it is difficult to diagnose. ME/CFS is often triggered by a viral infection, such as influenza or the Epstein-Barr virus, which causes Pfeiffer's glandular fever, and – as in Lea's case – SARS-CoV-2.

The symptoms of ME/CFS are varied and range from severe fatigue, i.e. extreme exhaustion, to sleep disorders and sensitivity to stimuli, to so-called brain fog, which leads to concentration problems or difficulty finding words. Orthostatic intolerance often occurs, meaning that as soon as sufferers sit or stand up, they experience dizziness, discomfort, visual and hearing impairments or palpitations.

Pacing: The most important therapy

Another characteristic symptom is what is known as a crash, whereby the patient's health deteriorates after physical or mental exertion. «The crash usually occurs one to three days after exertion and can last for days or weeks,» says Maja Strasser, a neurologist who specialises in the treatment of long COVID at her practice in Solothurn. A crash can also be irreversible, meaning that those affected do not recover from it. This can go so far that they can only lie down, isolated from stimuli as much as possible.

ME/CFS is the most severe form of Long Covid.

Chantal Britt, President of the patient organisation Long Covid Switzerland

There is no cure for ME/CFS. Individual symptoms can be treated with medication. The most important therapy is known as pacing. Sufferers must strictly ration their energy and not push themselves beyond their limits in order to avoid crashes. This allows their health to improve again.

«ME/CFS is the most severe form of long COVID,» says Chantal Britt, president of the patient organisation Long COVID Switzerland. The two conditions share most of the same symptoms, and the mechanism behind them is also similar: in people with a certain predisposition, pathogens trigger an excessive immune response, causing the body's functions to malfunction. In the case of SARS-CoV-2, this results in Long Covid. An American study estimates that around one per cent of all children are affected. In Switzerland, that would be around 18,000. It is not known how many of these have developed ME/CFS.

Constantly exhausted

Lea's ordeal began in autumn 2021, when she was twelve years old. At the time, she was going on holiday with a friend who was showing symptoms of a cold. Lea caught it too. Tests confirmed that both of them had Covid.

«I was tired and just lay in bed,» Lea recalls of the acute phase of her illness. After the ten-day quarantine was over, she still didn't feel any better. «At that time, hardly anyone knew anything about Long Covid, let alone that it could affect children. Not even Lea's paediatrician,» recalls Erika Sjögren, adding that she always stood up for Lea.

Because no one could find a cause for Lea's symptoms, she dragged herself back to school despite headaches, dizziness and exhaustion. At the time , she was in Year 6 at a primary school right next to her home. «I often laid my head on my desk to rest,» says the 15-year-old.

She usually only went to school in the mornings and slept in the afternoons. Most of her teachers and classmates were understanding. «They knew what Lea was like before,» says her mother. The situation was difficult, but under control.

Lack of understanding in secondary school

That changed when Lea started secondary school in the summer of 2022. The teachers expected her to do the normal workload and gave her marks for unfinished homework and for being late. But just getting to the school, which was further away and on a steep hill, exhausted her, as did climbing the stairs between classrooms, carrying her books and doing her homework.

Shortly after starting school, Lea fell into depression. She then spent seven months in a psychiatric clinic.

She suddenly realised everything she couldn't do. «All I could think about was that I couldn't do any of it and had no future,» says Lea, who actually knows exactly what she wants to be when she grows up: a vet. «I have the intelligence to do it, I just lack the energy.» Lea has a proven IQ of between 115 and 129, which is well above average. In the Stellwerk test, a standardised test for secondary school pupils, she was among the top five per cent.

Finally, certainty

Two weeks after starting school, she fell into a deep depression. She then spent seven months in a psychiatric clinic. «That's where I felt best. Everyday life was clearly structured with breaks in between where I could relax,» Lea recalls.

In the meantime, her mother pulled out all the stops to find out what was wrong with her daughter. «A colleague who is a doctor did some research and came across Long Covid,» recalls Erika Sjögren. They received confirmation and a diagnosis of ME/CFS in early 2023 after an examination at the Children's Hospital in Zurich.

Lea's hospital stay was followed by an odyssey through various private schools and a boarding school. Everywhere Lea went, she encountered ignorance and a lack of understanding, even though her mother explained the illness. Everywhere she went, she was pushed: «Try a little harder, a little longer.» This is poison for people with long COVID and ME/CFS. Crashes are inevitable.

Classmates would make comments such as, «Why doesn't she have to do any chores, why doesn't she have to stay at school so long? I'm tired too.» What healthy people don't understand is that the exhaustion experienced by those who are ill is not comparable to normal tiredness. It doesn't go away when they sleep.

The illness makes you lonely

Since February 2024, Lea has been attending a private school that offers individualised learning solutions. She feels comfortable there. Every student has their own timetable tailored to their needs. In the morning, Lea is taken to school by the school taxi, studies for an hour and a half and is then brought back home. In the afternoon, she lies on the sofa, listens to a podcast and plays a game for a short while.

When she has enough energy, she sits in the garden with her rabbits. She used to look after them, but now she can no longer do so. «Sometimes I can give them a little hay or put out some fresh water.» Nevertheless, Lea is grateful and emphasises: «I know others who are even worse off.» In between, she talks on the phone with two friends and writes to other young people affected by long COVID in a chat group. Meeting friends is often not an option: «Even conversations and emotions take energy.»

Many paediatricians know little about Long Covid. The symptoms are often considered to be psychosomatic.

Maja Strasser, neurologist

The illness makes you lonely. Even on good days. On bad days, brushing your teeth or even eating becomes an insurmountable task. Last December, Lea suffered a crash after being overwhelmed in various areas of her life. After that, she spent weeks lying in bed or on the sofa. Her mother fed Lea pureed food because chewing was too exhausting.

IV rejects support

Lea's life today stands in stark contrast to her life before COVID-19. She can hardly remember what it feels like to be healthy. Her mother remembers well: «Lea was very active, she danced, played the oboe, took singing lessons, did handicrafts, built fires in the forest and loved to travel.»

Erika Sjögren is raising Lea and her twelve-year-old brother Nilas on her own. This is an enormous burden for the mother, who works 90 per cent of the time. On the one hand, she has to help her seriously ill daughter with many things. On top of that, there is the paperwork and bureaucracy involved in dealing with government agencies, insurance companies, schools and doctors. «I can only manage it because I am able to work from home more often and have support from friendly neighbours,» says the atmospheric physicist, who now works for an insurance company.

The family receives no financial support from disability insurance (IV). The IV has refused to pay a helplessness allowance. According to the decision, Lea only needs help with getting around and can do everyday things like getting dressed and personal hygiene on her own. This really upsets Erika Sjögren: «That's just not true. Sure, Lea can do it from a purely physical standpoint, but she doesn't have the energy to do it. It takes her three hours to shower, and then she can't do anything else for the rest of the day. But that doesn't matter.»

Invisible children and young people

Children and young people like Lea are invisible in our society. Their illness takes place within their own four walls. However, not all children affected by Long Covid are as severely ill as Lea. «We understand Long Covid as part of a spectrum,» says Chantal Britt, «ranging from mild to severe with varying symptoms.» Mild symptoms can include headaches after exercise or a general lack of energy.

The youngest people recorded with Long Covid are eight years old. «Even younger children are probably less affected because their immune systems work differently, but we are also likely to be missing diagnoses,» says Jürg Streuli. The paediatrician is managing director of the Health Compass Foundation, which supports families in complex health situations with the help of specially trained health guides.

Missing diagnoses is a major problem in any case. This is because most paediatricians still have very little knowledge about Long Covid and ME/CFS. «The symptoms are very often dismissed as psychosomatic,» says Maja Strasser. Some parents are even accused of Münchhausen syndrome by proxy, where mothers and fathers feign or deliberately cause illnesses in their children in order to obtain medical treatment.

A long road to diagnosis

Until those affected receive a diagnosis, they are often sent from pillar to post. The difficulty is that there is no objective laboratory value that can be used to make a diagnosis. Long Covid and ME/CFS are exclusion diagnoses, meaning that doctors have to piece together the puzzle from subjective descriptions of symptoms. This is even more difficult in children than in adults.

For Lara Gamper, it is important to assess the child holistically. The senior physician at the Children's Hospital in Zurich says: «This also includes a psychiatric examination.» This is because depression and autism spectrum disorder can cause similar symptoms but are treated differently. Depression causes a lack of motivation, which is why motivational therapy can be useful. However, this is counterproductive in cases of long COVID and ME/CFS.

Lara Gamper says: «We have recently seen an increase in the number of children and young people who are unable to attend school. However, this is not usually directly related to COVID-19 or any other infection.» For her, it is crucial that paediatricians become more aware of post-viral fatigue syndrome. «Paediatricians should be responsible for assessment and diagnosis. They know the children and their families best,» she says.

Valuable time often passes before those affected receive a diagnosis. This is time when the chances of recovery are at their highest. «The outlook is quite good in the first six months and still intact in the first twelve. After that, it becomes very difficult,» says Chantal Britt. Children are more likely to improve or recover. No one knows who will recover and why.

Prevent crashes

If a child shows symptoms of Long Covid – for example, headaches after exercise or exhaustion more quickly than before after an infection – it is crucial to start pacing immediately. «As parents and teachers, it is important to listen to children and know their limits. It is essential to prevent them from completely exhausting themselves and crashing,» says Jürg Streuli. Paced living must become the «new normal,» then, in the best-case scenario, there will be a «return to the old normal.»

Lara Gamper emphasises that it is important to find a balance when it comes to pacing: «A child should not overexert themselves, but if they do not get enough exercise, they may lose muscle function, which can exacerbate certain symptoms.» Finding this balance is challenging and requires close monitoring. The resources to do this are often lacking, and families are left to cope on their own.

Every infection is like playing Russian roulette. At some point, the immune system can overreact.

Chantal Britt, President of Long Covid Switzerland

Important for children who have contracted or recovered from Long Covid: they must protect themselves from reinfection. Any reinfection can worsen the disease or cause it to reappear. Because those affected have a genetic predisposition to it, Long Covid occurs more frequently in certain families.

The risk of falling ill was highest during the first waves, says Chantal Britt. However, even those who have survived Covid without any lasting effects could still develop Long Covid. «Every infection is like playing Russian roulette. At some point, the immune system can overreact,» says the president of Long Covid Switzerland.

Failed the secondary school entrance exam

Protecting yourself from infection is no easy task in a society that would prefer to forget about COVID-19. Masks or HEPA filter systems, which are highly efficient particle filters, would help in classrooms. Maja Strasser and Jürg Streuli are convinced of this. «The indoor air quality in Swiss classrooms is very poor.» HEPA filters reduce aerosol pollution by 90 per cent, thereby also reducing the spread of various diseases. This has been scientifically proven. Both doctors are calling for such filters to be installed in all Swiss classrooms.

For Lea, attending a normal school day is a distant prospect. She took her secondary school entrance exam in March but failed. This was a requirement imposed by the IV so that it would pay for her private school until she completed her school leaving certificate. Although Lea was allowed to take the exam over two days instead of just one, with a little extra time, Erika Sjögren found this requirement completely incomprehensible: «Taking such a long exam was a huge strain for Lea.» Even her very good preliminary grades didn't count.

Starting this August, Lea will be able to complete her 10th year at her current school, which is paid for by the municipality. What happens after that is still unclear. She could keep her place at the school until she completes her school-leaving certificate, which she is allowed to do at her own pace. However, the family is dependent on financial support to cover the costs.

Lea and her mother are not giving up. The 15-year-old still hopes that one day she will be able to pursue her dream career. In the meantime, she is hoping that a treatment or medication for her condition will be found.